Facial and lip sores from lanreotide injections for NETs?

Posted by dbamos1945 @dbamos1945, May 27, 2023

NET monthly Samotuline Depot injections seem to cause increasing sores on face and around exterior lips. Help!

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I have sores and use Nivea lipcare and lipcare with calendula ( from Europe).
I also noticed hairloss, that I have not seen in the side effects..

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Pavina60: thank you for your response and helpful suggestions.
Yes, hair loss has been significant… all over body. I wear a wig daily and found wearing it boosts my self-esteem and attitude.
My current challenge with facial/lip/nose sores are painful & I m anxious to try your remedy’s. Thank you for caring about me.

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@dbamos1945

Pavina60: thank you for your response and helpful suggestions.
Yes, hair loss has been significant… all over body. I wear a wig daily and found wearing it boosts my self-esteem and attitude.
My current challenge with facial/lip/nose sores are painful & I m anxious to try your remedy’s. Thank you for caring about me.

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@dbamos1945 - how long after Lanreotide ( how many injections?) you noticed hairloss? I had my third on May 8 and hair is falling off like crazy... 🙁

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Pavina60: Hi I hope you are having a good day! I received my 6th shot in May. I use a large tooth comb and have a handful of hair morning and evening. I noticed an increase about 4 months ago. I no longer have hair on my legs and arms, and have sparse eyelashes, but my eyebrows remain about the same. I’m grateful I don’t mind wearing my wigs. I am 79 next week and don’t know if my age plays a part.

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@dbamos1945

Pavina60: Hi I hope you are having a good day! I received my 6th shot in May. I use a large tooth comb and have a handful of hair morning and evening. I noticed an increase about 4 months ago. I no longer have hair on my legs and arms, and have sparse eyelashes, but my eyebrows remain about the same. I’m grateful I don’t mind wearing my wigs. I am 79 next week and don’t know if my age plays a part.

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dbamos1945- I still have some hair... Before my surgery on Feb.1st I had a very short haircut to make it easier to take care of it. My hair used to be very coarse and lots of it, now not so much. I am 62 yo, have not gotten a wig yet, but that time is probably coming.. At least I am still alive - hair or no hair! ( my pNet was huge 20 cm, plus I had endometrial cancer. Had 9hr surgery for both) Hugs!🦓💜

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@pavlina60: wondering how your pancreatic cancer is behaving after surgery. My latest MRI showed significant tumor progression while on 2yrs of stable disease on Lanreotide 28day injections. I went to City of Hope, received 2nd opinion from renound NET Specialist and have received numerous choices of treatments. I choose PRRT over surgery and chemo and looking forward to 2nd infusion in August (hoping for quality over quantity of life). I am very interested in your health update if you feel like sharing. Best Health to YOU!

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@dbamos1945 - so far my disease is stable, no new growth after 16 months on Lanreotide. I have another CT scan in August. I will ask for MRI or PET-Dotatate when I meet with my oncologist in September. He tells me that until he sees ' negative development' to stay on Lanreotide (120 mg, 28days). In a previous conversation he mentioned PRRT as an option with fewer side effects than CAP/TEM..
But- debulking surgery is working for me thus far.
Wish you luck with PRRT! I am hoping to die with this cancer and NOT from it. Best health to you!

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